眼瞼けいれん、ジストニア治療の道のり

私自身が10年間、苦しんだ、
「演奏家に多い」と言われる病気の、手術と治療について記しています。

2月18日(Dr平)〜経過良好、と言いたいが、、〜

...

ぷくぷくは「ムクミ」だって。


 

 

傷の経過は、先生によると「良好」

赤みと、ぷくぷくは「ムクミ」だから大丈夫。

だけど、大事をとって、抜糸は、あと1週間待ちましょう。

だ、そうです。


 

 

私は、抜糸して、日常生活をちゃんとおくって、大丈夫!!!となるまでは、安心できません。

※ 「身体が機械に対して、拒否反応をおこしてる」件が、落ち着いたのか?も、まだ解らないし、また起こるかもしれない。

 


 

 

去年の最初に、このオペをしてから、頭の後頭部は、ボコボコです。

リードとか、色々、入ってるので、ボコボコ。

だけど、前は無かったのに、おでこの所がボコボコなのが、気になっていたので、きいてみた。

Dr平「大丈夫。痩せた?」だそうです。

おでこのリードも前からあったけど、痩せると、身体と同じで、頭も、皮?肉?が薄くなって、ボコボコをカバーしていたモノが無くなって、気になるようになってきただけで、心配はない。

と、言うことです。

「もうちょっと、太った方がいいんだけど」と言われたけど、

「年末からの、切って縫うの連続で、とにかく、疲れちゃって、食べて寝て、食べて寝てを繰り返してるけど、筋肉が全部おちましたぁ」

「そっかぁ、そうだよねぇ、、、」

 

 


 

そして、忘れがちですが、1月ぶりの目の調整。

※ 全て、このためにやってるのに、もはや、忘れがち。

左右ともに、0、5あげました。(4、5)

目は「楽に開いている」時と、「凄く辛い時」があって、不安定なので、

順調に、電気刺激を続けて、

「安定して開いている」という所に辿り着きたい。

りずむK


 

 

I went to see My doctors. (Physicians in charge)

( Finally !!!)

it’s really hard to reach the world famous doctor,(Dr. Taira)

I almost felt like I wanted to hug him .

he said that the wound looked good and healing well,

though they would postpone removing the stitches another week(just to make sure it would not open again )

I would have refused it , if they said they would said that they would  remove the stitches today, because it looked as though it could explode any minute .

 

 


 

 

Last week , I spoked to another one of my doctors. (Dr.Horisawa,another physician in charge. )

A) I totally understand that the brain surgeons always have emergencies

B) and I understand that there is a team of doctors of Dr.Taira & Dr.Horisawa , because there are hundreds of patients waiting and they simply can’t take care of all the patients one by one. themselves .

C) I’m not blaming Dr.Nakano(the Young doctor who did the recent operation ), because he did it under Dr.Horisawa’s direction. (simply followed the instruction of Dr.Horisawa)

D) However, I am only here,because I trusted Dr.Taira & Dr.Horisawa,and the system of ”the huge hospital ” is simply their problem. (Not mine)

E) As a matter of fact, I’ve seen and known it only too well that the new doctors keep coming into ” the Team” and, keep disappearing,without any notifications to the patients .

F) that you never know when Dr.Nakano (the young man)would be gone, in the middle of treating my wound .


 

Thus I’d wait, if either Dr.Taira or Dr.Horisawa is too busy to see me.

(doesn’t matter how many hours I’d have to wait) 

I would even make another appointment and go home( and come back again), if the chance of me getting to see the doctors are unlikely on that day.

because 

A) It’s better that way than having done the wrong treatment and it’s too late to undo it.

B) I really want to focus on curing my dystonia, and now it’s far from it, while I am struggling from the silly wound. (and I really need Dr.Taira & Dr.Horisawa to cure my dystonia )

C) I have given up everything (not only my jobs), I even have given up  walking my dogs,(I have someone do it for me now), and my First Priority is seeing my doctors. Nothing else really matters.

D) that I can come in to see the doctors, whenever they are available .( I mean ” Whenever” ) .

I am only 10 minutes away from the hospital by cub. 


 

Dr.Taira & Dr.Horisawa said that they totally hear me.

I really thank YOU, for giving advices and keep telling me Not to give up !!!  

Thank you so much !!!

even though you all are 13hours away from Tokyo, your encouragements had given me a lot of strength .

Even though a lot of things don’t work like the ones in the US, here in Japan.

but it certainly worth trying !!! XOXOXO

Rhythm K.